Sophie Kieffer, a passionate advocate for paediatric palliative care, has written a blog for the International Children’s Palliative Care Network about the experiences that led her and keep her in children’s palliative care.
In her blog she recalls her very first hospice experience, Sophie was 23 and was shadowing a nurse in a small community outside of Meru in Kenya. In Meru as in many other developing countries, palliative care is provided in a home setting. Sophie said, “We drove our truck, with a suitcase filled with medication, as far as we could until the car could no longer make it through the bush. We eventually arrived on foot at her small home, which looked more like a tool shed from afar – a perception that was confirmed up-close. Inside we found a weak, fragile woman lying on her side, her swollen blue and yellow breast exposed and leaking fluid. I had never seen anything like this in my life,” she continues, “Near her was a piece of bread, covered in ants. She was given the necessary medications, we smiled politely and told her we would pray for her. She died a few days later.”
Sophie explains how this moment was one of the moments that changed her forever. It was in this moment that she decided to do whatever it takes to ensure that people die a pain free and dignified death.
Sophie explains the challenge of measuring outcomes in palliative care and how a lack of these outcomes can have a negative effect on obtaining funding, she said, “In my Master’s programme we learned about indicators, results-based work, and the power of measurements. Through all of this I often thought, where does end-of-life care fit into this? You can measure pain medication stocked on a shelf or the number of patients who have access to chemotherapy. Beyond that lies the emotional burden and fear – from the moment of diagnosis to the uncertain outcome.”
In closing she said, “The phrase ‘save a child’s life’, has more dimensions to it than people think. Sometimes giving them quality of life rather than quantity and keeping them from experiencing a lonely, isolated or painful death is to save them. I do hope that one day the only thing we will be worrying about is curative or preventative measures. But until then, I will continue to fight for the comfort and dignity of all children, right up until their final hour.”
Sophie has recently returned from visiting different children’s palliative care programmes in Eastern and Southern Africa, and has also volunteered in similar programmes in South America, Nepal and Israel.
To read Sophie’s full blog, please click here.